Hello, it’s been nearly three years since I was diagnosed with Chronic lymphocytic leukaemia (CLL) and my most recent blood results are not good. My doubling rate is quickly approaching 6 months - though I’m thankfully still asymptomatic.
My consultant has recommend a pre-emptive bone-marrow biopsy for mutation testing - something I have to book in, in the next two weeks. The anxiety of this procedure is eating me alive - especially when it’s the last thing I think about before going to bed some nights.
I’ve read dozens of posts on this forum, though I’ve still got questions. I’ve had serious medical procedures in the past that were painful and my head is telling me this is going to be the same. I’m a very skinny build and would really appreciate if someone similar could let me know exactly what the process was like for them? I’m having the aspiration and trephine.
I understand the process is performed using local anaesthetic, along with gas + air; though before I speak with the secretary I wondered if there was anything else that that I could request to reduce the potential pain/anxiety?
Dear @bloodytall - It is perfectly understandable that you are feeling anxious about having your first bone marrow biopsy, especially when you aren’t entirely sure what to expect and have questions. Have you spoken to your consultant about your questions and concerns? It can be really useful to let them know how you are feeling so they can help.
Experiences of bone marrow biopsies can differ from person to person, but for me the anticipation of the procedure (I’ve had a couple - aspiration and trephine) outweighed the actual procedure itself.
Similar to you, I’m a slim build. I had a local anaesthetic, but I didn’t opt for the gas and air. I didn’t find the procedure painful, rather a little uncomfortable and strange. It was also a lot quicker than I had expected. I found it really helpful to take someone along with me to hold my hand and talk to me, so that I wasn’t just left with my worry and thoughts.
Afterwards the area was sore for about a day so I took some pain killers which really helped.
Take care and do let us know how you get on.
Maggie
Hi @MaggieLT , thanks for sharing your experience - it really does help. I’m sure I’m making this into a bigger deal in my head than it actually is. I found some reddit threads that made it seem like major surgery - which of course it isn’t. Can I ask, did they use a drill, or a needle of some sort to take the biopsy?
To answer your question, I’ve not yet. I did try calling before I posted on here - to find out their availability. I can get a little muddled with words on the phone and I like to have my thoughts written down. I’ve sent them off an email but I don’t expect a reply for a day or two. My consultant told me it was no worse than a bee-sting - not that I’ve ever been stung (at least as an adult).
To answer your question directly, they use a needle (aspirate) to get the bone marrow sample and then a trephine to get the bone sample - my consultant likened it to a tiny apple corer. I didn’t fancy looking at the instruments they used, but as I mentioned before I didn’t find either painful - I did feel more pressure for the trephine, but not pain. And after the procedure I sat for a bit with a cup of tea and biscuit. Then the nurses came and checked me over before I was on my way.
If you would like to talk anything through with one of our nurses over the phone or via email, please don’t hesitate to get in touch on 0808 2080 888 or via support@bloodcancer.org.uk. I’m also happy to answer any more questions that I can.
Hi there @bloodytall - glad you posted about this and sending you my very best as you await the procedure. My husband has a blood cancer and has had many of these and he’s always keen to let people know that he finds them okay. That’s not to say that those who feel they are awful are wrong. Id just like you to know he has said from the very first one that he’d rather have one of these than go to the dentist! Here they are done with local anaesthetic, gas and air are not part of them. He has always found that the specialist nurses who do them are so highly trained and, here anyway, they do them daily. This means they have the best technique and just get on with it quickly, safely and kindly. My husband has had 4 this year, has felt no real discomfort at the time or after. Just on one occasion, a nerve mist have got a little triggered and a buttock and leg took a bit longer to come back to life. There were many laughs as he kept saying it was so strange to have no sense of a leg, literally, to stand on. I do appreciate others find them very troubling but wanted to say mine really doesn’t. I hope the procedure gives all the info needed and you can move forward well. Take good care
Hi Bloodytall, I’m a relative novice with Polycythaemia vera (PV) and I’ve had one bone marrow biopsy. I live in Spain and in my case I was given a sedative and then about 30 minutes later when they did the biopsy I had a local anaesthetic.
Did it hurt, yes.Do I want another tomorrow,no. But, and it’s a big but, it didn’t hurt compared to other things like another respondent suggested.
My tooth split last year and had to be removed, that was a lot more painful, ditto re my wisdom teeth and various sports injuries.
I’m aware some people have had bad experiences but that is not my experience. If you’ve had other procedures you’ll take this in your stride, it’s not pleasant, it hurts, but for me, no more than other procedures/injuries that I’ve had.
Hopefully after the biopsy you’ll feel the same way.
I can understand your anxiety at having a bone marrow biopsy. I have had two as I have Myeloma (bone marrow cancer) and they were totally different experiences. My 1st was done by a trainee Dr who gave me negligible local anaesthetic so it was very painful. My 2nd was done by a team of nurses who specialized in doing bone marrow biopsies. They gave a generous local anaesthetic right down to my hip bone - I was having aspiration and trephine - and I was also given gas & air to use at specific times in the procedure. It was uncomfortable but more bearable. They made me a cup of tea afterwards too. Obviously everyone’s pain thresholds are different too. I would check whether you can take other painkillers prior to the bmb too. I felt sore for a couple of days but just took paracetamol.
Hope your biopsy goes smoothly.
Take care
Yvonne x
Hi ‘bloodytall’ - best not to worry about too much if at all, and certainly not to delve on social media like Reddit for opinions. The long and the short of it (no pun intended) I’ve had two over the last couple of years. They’re no big deal, honestly,.
Like most concerns beforehand about unknown events to come you’ll find yourself wondering afterwards what all the fuss was about.
A local anaesthetic will numb the area completely then a doctor or specially trained nurse will perform the procedure.
For my first, I was asked to bring in my favourite music to play and a delightful nurse distracted with me conversation whilst the doctor dealt with the procedure - hardly knew it was happening.
The second was more of an event, in that the hospital wanted to try out a new prototype drill/needle device and so I had an audience of one person from the manufacturer and two other doctors watching whilst it was proceeded with by a third doctor.
On this occasion my only real concern was that my backside would be revealed to this small audience as they obtained the sample from the rear of my pelvis but, thankfully, the carefully positioned medical dressing saved me from any real embarrassment.
Good luck and please try (I know it’s easy to say) to stop worrying - you’ll probably have had far worse visits to the dentist.
I really do appreciate you all letting me know what the process was like for you - it really is helping. I’ve now spoken with the team performing the biopsy - they’re been quite reassuring.
I’m booked in for next Wednesday. I’ll be sure to let you know how it goes.
That procedure was awful and I feel my anxiety was well placed.
I’m going to save whoever reads this from a minute-by-minute account - just know that I wish to never have another. The only saving grace is that the pain doesn’t last forever.
Hello @bloodytall I am glad the procedure is over for you. I am so sorry to hear how awful you found it to be. I have had similar experiences to you with bone marrow biopsies. I have had quite a few of them over the years for a different blood cancer, namely myelofibrosis. I consider myself to have quite a high pain threshold but they were really painful. I know my bone marrow is fibrotic which is part of the disease process so maybe that is why there are challenges for the medics doing the procedure. I am always interested to hear others experiences and am pleased for them when they say it isn’t too bad. Anyway just wanted you to know I sympathise with you and wish you well as you recover. Willow x
I‘ve had more than I care to remember. I’m now having it done every 6 weeks as they are not happy with certain mutations. It’s possible my Acute myeloid leukaemia (AML) may return. Just had the stem cell transplant conversation. Scary time ahead.
I am sorry to hear you are having bone marrow biopsies every 6 weeks. This sounds really difficult especially with the worry that your Acute myeloid leukaemia (AML) may return. I hope you have lots of good support around you.
Please do let us know how you get on and don’t hesitant to get in touch if we can help or support you in any way either here or via our nursing support line on 0808 2080 888.
